Just saw a neuro for the first time last Wednesday. Two weeks prior to that my primary care prescribed Amitriptyline and Baclofen for suspected TN. The neuro prescribed Tegretol 200 mg three times per day. Neuro said I probably would not need the Baclofen. So, my question is, does this dose seem high? I had started having dizzy spells the day before I saw the neuro, so it must either be the TN or the Amitriptyline. Has anyone else had dizzy spells from TN or is it the Amitriptyline?
Hi Cricketty--
I was diagnosed a month ago and my gp said I needed to start at a low dose of tegretol (epitol generic) and gradually build up to where i had relief.
He started me on 100 mg of tegretol twice a day. I even felt dizzy and weird on that amount for the first day or so.
Since i was diagnosed right away--that dosage seemed to work ok and I have not needed to up it yet. Maybe you could
just start at the 100 dose three times a day. BTW-- I have to chop the 200 mg in half-- the slow release I would only take once a day-- but that was a lot more expensive !! The epitol is only $1.00 with my insurance (at walmart) hope this helps!!
Your dose doesn’t seem high, in my opinion. Are you off the other meds then? Your neuro is right, baclofen is used as a booster to tegretol often when the tegretol isn’t managing your pain after many increases.
The dizziness and drowsiness etc are normal side effects, that will go away after a few days to a week or so, your body needs time to adjust and build up the tegretol in your system. Each time you increase the med you can expect a day or two of side effects. Each of us is different so really good idea to read through your phamplet from the pharmacy or google Tegretol, please follow your doctors prescription as ordered. If you’re unsure, call him/her or talk to your pharmacist…
Good luck, I hope you find relief soon. (( hugs )) Mimi
Iam on 600 mg Tegertol ( 1 1/2) in the mornings and the same before bedtime. Dizzy yes sometimes when I sit and stand up to fast. My doc said i could try 2 pills in the mornings and 1 at night or the other way. No way with me. thats works in the moment. At first when I was at the ER here . It was 1 pill for 3 days at night time and the 1 in the morning and evening. slowly up. You can try it this way if you feel better with that. Hugs Pia
I was prescribed both medications. 1st day I was such a zombie, so cut 1 pill in half. Not sure which one is making me feel drugged and dizzy - not so bad today - must be just the first few days??? Does the drugged feeling ever go away? Still feel "iffy" in the mornings - feel like the pain is right there and ready to hit. Hope that goes away.
I can't tell if the drugged feeling is from the Elavil or the Baclofen. Yesterday after I took the Baclofen I ended up falling asleep off and on for over 4 hours. Didn't take it this afternoon - so far so good, but feels like it's right there.
Maybe it's a combo of both of them. Would like to know that this sleepiness will get better.
Cricketty said:
Thanks Nora.
I started cutting the amitriptyline in half and that helped with the constant drugged feeling. Saw my neuro this week and he said I need to be taking the full dose. Dizzy spells are better, but I still have not increased to the full dose. I can't seem to function normally for a good 18 hours and then it is almost time to take another pill. :) I too feel like the pain is right there on the edge. Scary feeling when you are terrified of the next flare up waiting around the corner. Hope you are doing okay and have many pain free days ahead.
I dont know if this is going to help at all, but here goes. When everything happened to me (January 6, 2011), I had a major headache, constant facial pain, and well, brutal dizziness. I unfortunately was diagnosed WRONG - with atypical facial pain. My dizziness/vertigo lasted 22 hellish months. So, during that time I saw everyone I could. A certain Dr. Kaufman - the specialist here in Canada for MVD - made it clear to me that NO DIZZINESS is associated with FACIAL NEURALGIA. So with that, I set out to find someone who dealt with vascular facial pain - i.e.. migraine. Once I started out on migraine meds (beta blockers, topomax, amitriptyline) I started getting better - not that I am better totally, but at least I am not dizzy and I am functioning much better than I have over the last 2.5 years.
Anyhow, perhaps it is just your meds that is causing your dizziness, but I thought I should add this anecdote.
good luck
After 2 years on 800mg Tegretol, I developed what was initially dizziness and very quickly became vertigo, non-stop, went for all sorts if vestibular testing…spent a month literally sitting in a chair with little movement, the vertigo was overwhelming.
after a year of testing and many different ents and specialists it was determined it was from the Tegretol.
I never stopped the Tegretol, the vertigo eventually dissipated on its own after a few months…
Side effects can appear at anytime during treatment…I had never had vertigo before this and had been on Tegretol for quite some time…
Mimi
I'm not up to 1200mg of Tegretol XR (extended release) as of last week. I agree with Mimi that when you first get on Tegretol, you will experience a series of side effects. Just look at the side effects on the paperwork that came with it or look it up online on WebMD. For me, it was more of an "unsteadiness" than dizzy, plus drowsy and "dementia-like" side effects. I do have that constant brain-fog/forgetfulness but for that day or two after I increase the dose, it gets far worse like I can't remember the lyrics to Jessie's Girl, have trouble with directions to someones house that I've been to often, or just problems getting the words out of my brain into my mouth especially when I'm talking about something specifics but really simple easy words. It does then calm down but then after a few weeks, the pain starts breaking through and I start the cycle again.
Honestly though, I can handle the Tegretol XR side effects a little better than the Trileptal ones that I was on first. I got up to 1800mg on Trileptal and I was starting to more frequently have these "drugged out" periods which felt great but left me unable to function for an hour or so. Also, it made me nauseous and extremely drowsy. I fell asleep constantly in the middle of the day, which is something I never do. The Tegretol XR is extended release so it gradually releases into the body rather than the dump of Trileptal.
These are very strong medicines. They do work well with TN pain most of the time but come with a host of side effects that are a little different but in some ways similar for all. Do give your body time to adjust. Many of the worse side effects will go away or at least lessen.
Best wishes to you!
I am feeling much better this week. Stopped taking the mid day Baclofen and I'm still okay. Feels like the pain is right on the edge still, but not crossing over. Only bad thing is the confusion I feel - I also tend to forget words or can't find them - not a good thing when you're a teacher. :) Saw the neurologist for the first time today - he said I was in remission, but he couldn't tell me how long it would last. We're going to ride it out for about a month and revisit how I feel. Guess that's okay with me. I feel lucky that the medication is working for me so far. Appreciate all I read on this site.
mybell said:
I'm not up to 1200mg of Tegretol XR (extended release) as of last week. I agree with Mimi that when you first get on Tegretol, you will experience a series of side effects. Just look at the side effects on the paperwork that came with it or look it up online on WebMD. For me, it was more of an "unsteadiness" than dizzy, plus drowsy and "dementia-like" side effects. I do have that constant brain-fog/forgetfulness but for that day or two after I increase the dose, it gets far worse like I can't remember the lyrics to Jessie's Girl, have trouble with directions to someones house that I've been to often, or just problems getting the words out of my brain into my mouth especially when I'm talking about something specifics but really simple easy words. It does then calm down but then after a few weeks, the pain starts breaking through and I start the cycle again.
Honestly though, I can handle the Tegretol XR side effects a little better than the Trileptal ones that I was on first. I got up to 1800mg on Trileptal and I was starting to more frequently have these "drugged out" periods which felt great but left me unable to function for an hour or so. Also, it made me nauseous and extremely drowsy. I fell asleep constantly in the middle of the day, which is something I never do. The Tegretol XR is extended release so it gradually releases into the body rather than the dump of Trileptal.
These are very strong medicines. They do work well with TN pain most of the time but come with a host of side effects that are a little different but in some ways similar for all. Do give your body time to adjust. Many of the worse side effects will go away or at least lessen.
Best wishes to you!